apocaloptimist…

18Jul

…sometimes I have trouble with tunnel vision…I can only see what needs to be done…or bills need to be paid…or floors need to be washed…or bathrooms scrubbed…or laundry folded…or meals made…feedings given…you get the drift…all I see is negative and it makes me grumpy…not pleasant to be around…short tempered…yep…today was one of those days…the mail came…more envelopes with windows…the mortgage needs to be paid…so do twenty other things…payday come and goes…all within thirty minutes…it’s a constant stress here…it’s one I struggle with…it’s one I dream of being rid of one day…maybe one day…maybe…I get stuck in this negative head space worrying about how it will all be taken care of and I lose perspective on the beautiful young woman who fights to be here everyday…we had a long night last night…seizures came and went…Mama calmed and soothed…rocked and sang…Miss Courtney fell back asleep around 3 a.m…I crawled back into bed and had a tough time sleeping…so many things running through my head…how much more will God ask of me and my girl…how many more years of caregiving are ahead of my hubby and I…will we ever get a full nights sleep…how will we handle the expenses that will come…how will I get everything done in the house when I am spending so much time holding Miss Court…will I ever have the energy to workout again…or cook dinner…I am so tired…so very tired…needless to say I did not get back to sleep quickly…Miss Courtney was wide awake at 8 a.m. as if nothing had happened and this Mama feels like I have run with the bulls and lost…badly…thank goodness for the healing power of caffeine…I have ingested quite a bit today already and I sense there will be more…the worry is still there…I need to lay it down…seriously lay it down and trust that all will be well…I mean it never solves anything this constant worry and pacing back in forth…and yet I still do it…a lot…I need to get the heck out of the tunnel and change my perspective here…life is meant to be lived and not dreaded…it’s just that there is so many details to daily living that if I forget one…bad things happen…really bad things…I need a winning lottery ticket…I guess I should actually BUY a lottery ticket if I expect to win…for example today this happened…three weeks ago Miss Courtney’s Vusion Diaper Cream (miconazole nitrate 0.25% USP, zinc oxide 15% USP, white petroleum 81.35% USP) which we have used for over ten years to help prevent rashes and skin breakdown in her diaper area, was a $15 co-pay. Now with our new insurance plan going into effect on July 1, it is $375 per 50 gram tube!!!! That’s with insurance!! After my eyes bugged out of my head…I took a deep breath…kindly told the pharmacist no…came home steaming….I cannot handle any more today…Nope…I cannot…what will I use that will help keep my girl safe from skin breakdown and rashes…have.no.odea…see…focused on the negative….tunnel vision…aahhhhhh…we are so blessed…He surprises us ALL the time…God has provided ALWAYS…why can’t I just lay it down and walk away believing all will be well…why can’t I be happy and content with what has already been provided…I am what we call an “apocaloptimist”…God is good ALL the time…He will provide ALL we need WHEN we need it…He will never abandon…He is always with us…He is still writing our daughter’s story…He is still writing my story…miracles abound…every day…I forget that way to easily…we are blessed…very, very blessed…all will be well…Jesus I trust in YOU…all will be well…in HIS time…

Well, my eyes were out on stalks too at the price of that cream! I am going to pray specifically about that because that is a problem! no doubt about it! I will pray to my dear friend St Anthony who loves to sort out problems like that which prey on a mother's mind. It seems a small thing but he is always happy to remedy small things to make family life run smoother. I am asking that there is a much cheaper cream which is EVEN BETTER than this one for Courtney. Mary, have a little look and ask around about that. I really sympathise with the lack of sleep. My dear Sam, now 3, has Melatonin for getting to sleep now, but for 18 months before he was prescribed it (I begged the paed to do it sooner) he was sleeping for as little as 3 or 4 hours a night! I know that you can do nothing good after a night like that, except eat to replace the energy you should have from a good night's kip, and use caffeine if you are so inclined (I have rooibos tea). And take each minute as it comes and lower your expectations and cross out your to do list.Much love and prayers to you all, I am praying now for a better night tonight.

Thank you for always coming to trust. I pray each day that you are given just enough strength and grace to live that day. I also hope you pocket book always has enough even when it seems like it can't possibly.

So happy to hear that you have some suggestions for alternates to your daughter's ointment. Pharmaceutical companies can be like Robin Hood in reverse – robbing from the poor to fill their overflowing pocketbooks. I am waiting for the patent to run out on one medication that I have been taking for years and it seems like the company keeps getting an extension to keep it from being available in generic form – grrrrr.